Over the weekend, I found myself feeling disconnected from my Self. Like most of us, I wear a lot of hats: I’m daughter, primary caregiver for my dad (who has late-stage Alzheimer’s and vascular dementia and has been in hospice since December 2014), responsible for family finances and running the household, business owner, active church volunteer, and the person behind The Purple Sherpa and its website, Facebook page, and several Facebook groups. On top of all of that, I took an emergency trip to support a dear friend and help with her kids as she moved her husband (who is also a dear friend) into hospice, and I ended up sick for the better part of a week. A lot has been going on… Topped off with the ordinary-for-an-dementia-caregiver stress and grief, even stronger because of my friends’ situation.

I noticed that I was feeling exhausted, weepy, and short-tempered. Pressing on through everything on my to-do list didn’t help. As I was driving to church for the third meeting of the week (late, as usual), with a burning in my gut, I realized that I felt like a robot, not like myself. My Self. The person I was before the moment when I realized that something was wrong with my dad, before I realized that my plans were about the go on the shelf because I needed to care for him.


And I fantasized for a few couple of minutes during the drive about things I’d love to do. Escape to the mountains or the beach for a vacation. Just keep driving—nobody would know I was gone for a couple of hours, at least. Curl up in the sun and read a good book and nap. Go for a long day trip, driving somewhere new and fun. Go out to lunch, or dinner, or lunch AND dinner. Things that aren’t impossible in themselves, but they are not possible right now… Not without a lot of advanced planning, budgeting of time and/or money, and either a much bigger chunk of clear time or irresponsibility than I can muster.

I looked at my hands gripping the steering wheel, and they didn’t even look like my hands. That’s when I decided what to do for myself: a manicure. Of course, I didn’t have time to go to a nail salon and get a real manicure, but when I got home, I took a shower, pushed my soft cuticles back with the towel, and slapped on some red fast-dry nail polish.
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Red nails remind me that I am still my Self. When I looked at my fingers (a long shot from being perfectly polished, but still pretty) I could remember that caring for my dad is who I am, is my choice and privilege, and that many of my other activities are a commitment to having a life outside caregiving and a life to return to when my caregiving duties are complete. Even today, with my polish chipped and battered, I feel a connection with me that keeps the endless task list from feeling quite so smothering.
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Isn’t that what self-care while being a caregiver is all about, finding the things that remind us of who we are other than our role as caregiver? It’s easy to let our plans, our needs, our wishes, even our selves subsume into those of our loved ones. And because of the nature of dementia, loved ones quickly lose the ability to remind us. Dementia becomes all-consuming for those who are diagnosed and those who care for them.

​Long-term self-care is critical for caregivers. Not only does us make us better at caring for our loved ones, but I also see it as a flag in the ground, a declaration to the disease: You are claiming my loved one, but you won’t get me too. I won’t let you take me. I will fight for me just like I fight for my loved one. If you need ideas on how to build self-care into your day-to-day life, click here to download our free Comfort for Caregivers guide.

by - Julie Fleming

​Surviving Alzheimer’s: Practical  Tips and Soul-Saving Wisdom for Caregivers  appealed to me largely because I found it at a time when I wasn’t sure I would survive my father’s illness. It offers bite-sized tips and stories with support and instruction, making it easy to read in short bits of time. I also appreciated the emphasis on addressing stress and increasing quality of life for both the person with Alzheimer’s and those caring for him. The book teaches a problem-solving framework that will support you throughout your caregiving.
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